Does anyone have a solution to help manage Reclast side effects?

@lo62
The only thing I've heard of working is steroid. https://pmc.ncbi.nlm.nih.gov/articles/PMC12121932/
"Following the resolution of her symptoms with prednisone, the patient did not experience a recurrence of severe arthralgia or systemic inflammatory symptoms."
In earlier cases IV steroid we seen to be more quickly effective.
You might ask the prescribing doctor for a five day taper or the IV. ( I mean that I would and i wouldn't wait. I'd insist on the IV Steroid with ASAP scheduling) If the doctor isn't responsive you might try one of those corner clinics or your primary care.
Steroids are hard on bone density, but a long term inflammatory response is said to be even more destructive.
I'm sorry you are suffering.

@lo62 I’m curious, how long has it been since you had your infusion? I did speak with an Endocrinologist pharmacist and he shared that it remains in one’s system for around 18 months. It has been 18 months for me. The pain level was a 10+; 18 months later, most days it is maybe a 2. However, once in a while the level spikes at maybe a 3. The 3 is not life threatening; more of a stressor. I just hope the day comes that the side effects are gone!

@lo62 I agree it has to be reported and your prescribingdoctor should be helping you through this an manufacturer needs to be notified. Let me tell you that my experience was exactly the same! But it resolved after five days. The way I look at it is that my body needed the medication my bones needed the medication. And I think that is a possibility here-– that your body is in need of what the medication is doing and that’s the side effects that you are experiencing. I myself will go back for the injection when I finish the TYMLOS. They are going to do the infusion very differently. They are going to slow the infusion down. They’re going to use a smaller dose and I’m going to go in having flush fluids and taking Tylenol before the injections. There are very small amount of us that have severe side effects the first time. It’s something like a 10th of a percent. And we show up here on this site to share our stories. When we go back for the second one it’s like . 1 hundredth of a percent with side effects that are not as severe. I will tell you that my side effects were in areas where my bones were as thin as paper so that’s why I correlated my need for the medicine to the side effects I had. So I won’t be giving it up, but I will be figuring out ways to diminish the side effects. And I’m sorry you had to experience this and I’m sorry I had to experience this. And if your doctors aren’t working with you, I encourage you to find somebody who will. I had a scream and shout a lot. (will not scream and shout) but I definitely had to advocate to get the attention I needed. I was appalled at how I was dismissed.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11480138/

@gently I also read 2.5mg infusion dose is just as effective in trials as the 5mg dose! The 2.5 mg Dose in Research and Practice
Clinical Trials: Multiple studies have shown that a 2.5 mg dose of zoledronic acid can produce substantial and prolonged anti-resorptive effects on bone, with similar increases in bone mineral density (BMD) at the spine and hip compared to the 5 mg dose over a year. These studies suggest lower doses may offer similar efficacy with a potentially lower risk of side effects, such as the acute-phase reaction, which tends to be less frequent with lower doses.
Duration of Effect: A single 2.5 mg dose has been shown to prevent bone loss for at least 3 to 4 years, highlighting its potent and long-lasting action.
Specific Clinical Use: The 2.5 mg dose may be used in specific cases for patients with mild to moderate renal impairment, as the dosage may need to be adjusted to achieve a similar drug exposure as in a patient with normal renal function.
Cost-Effectiveness: In resource-limited health systems, the effectiveness of lower doses (like 2.5 mg or even 1 mg) has been explored as a potentially more cost-effective strategy to treat more patients at risk.

loriesco, are you looking at information from 2012? that I didn't know about.

@dannyandebbie
I am the one with pseudogout of the knee secondary to the Reclast. It has been unrelenting and refractory to all treatments. It has been 15 months since I had the infusion. And I have an another complication from the pseudogout called lipoma arboresens which is a benign fatty tumor growing off the synovium inside my joint. It is from the inflammation caused by the crystals. I had some degenerative disease of the joint beforehand. But things have gotten so bad from the joint effusions, inflamation and the lipoma that I have to have a total knee joint replacement. It has been a rough year.
I would like to know too when the Reclast physiology goes away.

@cccs from what I was told, about 18 months. Well, I am on my 18th month and I can say, on a good day, my pain has gone from a 10 to a 3 on average; some days lower and others a bit higher. I just feel it is slowly getting better and the last thing I want is a full reoccurrence and I fear another infusion of any medication can and more than likely will cause additional or continuous pain all over again.

@dannyandebbie I am glad you are better. And I understand your hesitancy for any more treatments. I am faced with the same dilemma. I will not repeat Reclast for sure. I wish I could find out more on the physiology of Reclast causing these painful episodes. I sure was not expecting a total knee replacement when I started.

cccs, sorry about you knee. There are studies that suggest that the bisphosphonates have protective effect against degradation in the knee, but others suggesting that bisphosphonates have deleterious effect.
There isn't enough research to warn us or encourage us.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11505443/
The mechanism of action is thought to be that aminobisphosphonates transiently stimulate the production of proinflammatory cytokines such as interleukin-1, interleukin-6, and tumor necrosis factor-alpha.
https://pubmed.ncbi.nlm.nih.gov/16755241/.
https://www.sciencedirect.com/science/article/pii/S1063458420310864
from communication with an endocrinologis who oversaw the Reclast trials.
"When amino-bisphosphonates (N-BPs) are administered IV, resulting in a high systemic exposure (unlike when taken orally, where the very low oral bioavailability results in a quite low systemic exposure), phagocytic cells other than just osteoclasts can encounter the N-BP, Up to 30% of patients can experience an APR (acute phase reaction) after their initial infusion of zoledronic acid. This APR, which starts usually about 6 hours post-infusion, and can last several days, consists of a mild fever associated with muscle and joint pains, similar to the symptoms with a bad viral infection such as the flu. And it turns out that the cause is very similar, as well. When a special category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it, just like an osteoclast will engulf alendronate or zoledronic bound to the bone surface. And just like an osteoclast that engulfs a N_BP undergoes apoptosis (programmed cell death), the gamma-delta T-cells that engulfs a N-BP also undergoes apoptosis. The difference is, when a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha, just like when it encounters a flu virus. And these inflammatory cytokines mediate the temperature rise and myalgias, just as with a flu infection."
I think that this https://pmc.ncbi.nlm.nih.gov/articles/PMC8373857/.
article might explain the longer term consequences for some on this and other medications.